My LAVH surgery (hysterectomy) last week was by all appearances a success: My uterus and cervix are no longer with me, but my ovaries are, which means that menopause will come at its own sweet pace. I'm not in a rush for that!
I learned that morphine gives me a wanging headache and nausea. I have learned that I am not alone with these side effects. Why, oh why haven't they come up with some different pain med to start with?
I also learned that distraction, meditation and sleep are darned effective pain management techniques themselves. Whew!
The day after surgery, I felt pretty lousy. Abdominal pain, headache, nausea. I knew I'd feel better at home. The requirements for getting released? 1) Walk; 2) Pee; 3) Eat solid food and keep it down. I figured I could handle #1 and #2, but #3 was going to be a challenge, both from a physical point of view and a logistics point of view. From my pre-hospitalization research, I knew that most of my friends and acquaintances with celiac advised that I not trust the hospital food service to not cross contaminate. I learned from the dietitian at the hospital that they (think they) have pre-packaged gluten-free breads, chips, and cookies, plus they could steam vegetables, etc, and that they would be willing to go to great lengths to bring me whatever would be suitable. That sounded promising, but I decided to not trust them anyway, and I brought a pureed pumpkin soup and a pureed squash soup from Trader Joe's and a microwave-safe bowl so that if I wanted it, my partner Jenn or a nurse or aide on the floor could nuke it for me. I still felt pretty queasy, but I thought I could manage the soup long enough to get out of the hospital. By this time I had been off the morphine for about 12 hours, and I was loaded with anti-nausea medication, so I figured I had a 50-50 shot at success. Unfortunately the nurse ruled that pureed soup didn't count as solid food and that I'd need something more.
Argh! Should have brought some gluten-free crackers! The hospital's food service machine was invoked to see what might be on hand. I was actually quite surprised that in less than half an hour a gluten-free vegetarian tray of solid food appeared. The broccoli and green beans were WAY overcooked, so I'm guessing that they didn't boil 'em up special for me, increasing the possibility of cross-contamination. They did bring packaged and clearly marked potato chips and cookies, which turned out to be my ticket home.
So, my advice to you for your next hospitalization: Like me, you may not be interested in food at all, but take something just in case. I had a gf clear broth that Jenn brought for my liquid diet day, and comforting sounding soups for my solid food day. I wish I had packed some mild gf crackers, since hospitals and nurses seem to understand that crackers = solid food. I think that hospital food service will get more responsive over time, but the distance between the room and the kitchen is a very wide gulf and there is no real way to reassure a gluten-intolerant patient that food handling procedures are safe. I'd actually suggest to any hospital listening that they do like the airlines and get hermetically sealed microwavable gluten-free meals to increase the consumer's confidence in the product.
My surgery +5 day postscript is that I am amazingly uninterested in food. I'm not hungry and nothing sounds good. Coffee is gross. Sleep, meditation, distraction and pain meds are very popular with me right now. I know this is temporary, so I'm trying to appreciate the gift of enforced rest and all of the warm wishes from family and friends.
There is some evidence that the gluten-free diet reduces painful symptoms of endometriosis. Of course, I didn't know I had endometriosis or a big fibroid until a couple of months ago. I've been on the gluten-free diet for several years, and all I can say is, boy, I guess I would have been really miserable now if I hadn't gotten the celiac diagnosis in 2010. There is also an indication that women with endometriosis are more likely to have celiac disease (here's a link to a good summary.)
I'll admit that I might have been one of the handful of women in the western world that didn't really know what fibroids or endometrial cysts were until recently, but my easy and highly technical explanation for those who are also unaware is that there is a bunch of extra goop and blobs of stuff that should have been reabsorbed into my body that have attached themselves to my uterus and ovaries, and maybe other internal organs or surfaces.
Doctors are fond of comparing these tumors to the sizes of various food items. So, to give you some scale, my fibroid, which has fully engaged the interior, wall and exterior of my uterus, is around the size of a tangelo. My right ovary, which should be the size of an almond, is more the size of an avocado. I recall that my mom had an ovarian cyst in 1973 (maybe they would call it an endometrial cyst now?) was the size of a grapefruit. Goodness! These things cause fertility problems, but for women like me who don't want to get pregnant, mostly the medical community suggests trying to wait these things out. Once menopause comes along, nature takes its course and the things shrink or go away. One big symptom is painful and heavy periods, and once a woman doesn't have a period anymore, then no big whoop. Women are supposed to be able to bear a great deal of discomfort and blood loss on a regular basis, right?
I do sort of agree with the "wait it out" approach. I'm not one to over-medicalize a situation if I don't need to. However, I have been anemic for the better part of 30 years. My anemia piqued my hematologist's suspicions that celiac might be the cause. Turns out he was right about celiac, but the anemia hasn't substantially improved as a result of the gluten-free diet. I still go for regular iron infusions through an IV drip, a process that takes more than two hours in a chemo ward overlooking Washington Square Park, usually once a month. I have continued to search for (and so far, rule out) other possible causes of blood loss. For example, I've had an endoscopy and colonoscopy to confirm that the lining of my small intestine has healed, and I don't have ulcerative colitis. Which brought me back to menses, the thing my doctors told me all along was the cause. But how does a person know if her period is unusually heavy? Sure, it seems heavy to me, but I've heard stories from other women that make my monthly tale a mere trifle.
Plus, for every visit to the gynecologist in my adult life, I have mentioned painful cramps and heavy bleeding. To a person, they've told me that if I would just get pregnant it would all get better. Or how about I go on the pill? I did try the pill once maybe 10 years ago, the kind that you just take and take all the time and never have another period (Yasmine, which I see on the class action commercials apparently caused some women A LOT of problems.) I took it for maybe 3 weeks, when I experienced "breakthrough bleeding" while wearing khaki pants on a light green cloth sofa (fortunately I hadn't left for work yet!). I decided I'd rather bleed when expected and I never liked the idea of jacking myself up on hormones anyway, so I stopped taking it. So as I closed in on "heavy monthly blood loss" as my cause of anemia, I was mentally debating whether I would be open to the hormone discussion again.
It was my primary doctor who told me that the anemia had really gone on too long and that I should consider a hysterectomy. I didn't think an insurance company would pay for an expensive intervention if they could just throw pills at me, but she assured me that the monthly iron infusions were enough evidence that the hysterectomy was a medically sound next step. First though, I'd need an ultrasound to see what was going on. Then I'd need to find a gyn (my Yasmine provider isn't practicing anymore), and not just any gyn, but one that specializes in women's bodies specifically and not in childbearing issues. The ultrasound indicated a fibroid and an enlarged ovary, so when I met with the doc, she said H word (hysterectomy) along with some other options, but that I needed to have an MRI to get a better idea of what would be required. Off to the MRI people (my first time for this procedure too. I don't get especially freaked out in small spaces for short durations, so no big deal, though I had no idea how loud it would be.) Then back to the gyn, who confirmed that the fibroid's occupation of my uterus' interior, walls and exterior would indeed require a hysterectomy. And then there were these endometrial cysts. I'm not sure how much of that is going on, other that it's the cause of my enlarged ovary. I'm hoping to keep one ovary to postpone the onset of menopause for as long as possible.
So, in the months and weeks leading up to the surgery, which is now scheduled for next week, I've taken the following steps to prepare:
1. I had one last unpleasant period, for old time's sake.
2. I called my cousin the nurse to find out what a hospital stay would be like, since I haven't been hospitalized in almost 30 years.
3. I polled my celiac friends and acquaintances and discovered that I should, in no way, shape or form, trust the hospital food service to not serve me cross-contaminated food.
4. I discovered a great website, www.hystersisters.com and learned what pre and post op life would be like from real women who've lived it.
5. I've learned that LOTS of women in my life have had some version of this done. They were all appropriately supportive and gave me an idea of what would hurt and for how long.
6. I did my best to get all my work projects in good shape, or in the hands of a team member or colleague who will guide them through until my return. There's a bit of guilt and worry associated with being out of the office for 6 weeks, but I work with some really great people who want what's best for me and who will help pick up the slack in my absence.
7. I bought a new (used) car. Okay, I was planning to do this anyway, but the research and test driving and all that were a fun distraction in the weeks leading from scheduling the surgery to going under the laproscopic knife. And there was a tiny bit of mid-life crisis rolled into it. Sure, I kept it practical and inexpensive by picking a 4-door hatchback Kia Soul! (31 MPG highway), but I was determined to have a stick shift, a sunroof and CD player. And not only that, but the one I found is orange with a black racing stripe AND a spoiler!
8. I want to mow the lawn and clean the bathrooms, since I don't think I'll be able to do that for awhile. I've also been imagining where I'd like to spend my time immediately after surgery when mobility is low. And I've been thinking about low energy activities and projects that I can work on so that I don't get blue. The list includes sitting in my new used car and reading the owners manual to figure out how to operate all the stuff I've never seen in a car before. Apparently I can just tell it to call people. What? Lots of people have suggested I watch their favorite TV series from the beginning of time. Maybe. But I picture myself scanning our wedding and other pre-digital photos, or working on my next e-cookbook with either HGTV or Xena reruns on in the background. And walking. Lots of walking. I'll keep you apprised.
"We teach best what we most need to learn." Richard Bach, Illusions. I guess that is the SHORT short version of why I'm doing this.
I know it may puzzle people who know me that I am spending my free time on this gluten free thing. And before I got diagnosed with celiac, I would have thought so too. I remember a conversation with our pediatrician 9 years ago when talking with her about our older son's mild reflux issues. She mentioned celiac and I made a face and said something enlightened like, "Isn't that pretty weird and rare?" She said no, not that rare (she ignored the "weird" comment), but because we didn't have any other indications that he might have gluten issues, we didn't pursue testing. [My son, now 10, and I are not biologically related and he has no symptoms of celiac, FYI.]
And is my way, once I got diagnosed, I began a steep learning curve on how to live gluten free and about the disease itself. What I found is that it's a way bigger deal than most people think it is, and it looks like it's only going to get bigger. (More about that in a minute if you want a deeper dive.) But what's the big deal anyway? So you have an upset stomach, so what? Well, for one, "upset stomach" doesn't begin to approach the severity and host of symptoms that some people experience. For two, untreated celiac can open the door to a whole host of conditions and illnesses, including cancer, which can make your life miserable and shorter. That's the big deal. If you have celiac, go gluten free, feel better, live longer. If you have any reason to suspect you might have celiac, talk to your doctor and ask to have the antibody tests for celiac that may indicate a need for further testing. Go here to see a symptoms checklist.
Before I got the celiac diagnosis, I was interested in helping people adopt strategies that would increase their general level of happiness. Since diagnosis, I've met and interacted with lots of people with celiac in person and in the cyberworld who could really use some techniques to get happier. This is supported by research that indicates that people with celiac, especially women, are more likely to be depressed and anxious.
So that's the point of my quest to help others be happy, healthy and gluten free. Keep reading if you want the numbers.
The number of people needing to live gluten-free is exploding. 1 in 133 Americans are diagnosed with celiac, many more are gluten-intolerant, their caretakers add to the ranks of people who assist with their meals, and many more people will be diagnosed in the near future as information about celiac and gluten intolerance increases testing and diagnosis.
In the United States, celiac disease is a genetic disease that affects at least 3 million people. That's 1 in 133 (for comparison, that's more than twice as many people as those who have Type I diabetes). But the number more than doubles if you have any symptoms (and there are LOTS of symptoms that you wouldn't necessarily connect to a GI issue), and the incidence of celiac is 6 times higher if you have a relative that has it. And what's more, researchers studying a population of both symptomatic and non-symptomatic people found that 60% of children and 41% of adults diagnosed during the study were asymptomatic, meaning that they would have had no physical reason to seek out testing. (Source: A multi-center study on the sero-prevalence of celiac disease in the United States among both at risk and not at risk groups. Fasano et. al., Archives of Internal Medicine. February 2003.) If you add in the number of people who are gluten intolerant (which means that they have symptoms but haven't tested positive for celiac) and the number goes up from there.
What's more, the time it takes for a symptomatic person to be diagnosed with celiac disease in the US is four years, increasing that person's risk of developing other autoimmune disorders, neurological problems, osteoporosis and even cancer. (Source: Characteristics of adult celiac disease in the USA: results of a national survey. Green, P.H. et.al. American Journal of Gastroenterology, 2001, 2006.)
And what about the Happy part of my equation? There are numerous studies that indicate that people, especially women, with celiac are more likely to be depressed and anxious than the general population even after they have gone gluten free. (Source: Future issue of Journal of Chronic Illness. Josh Smyth.; World J Gastroenterol. 2010 Jun 14;16(22):2780-7. Häuser W,; Janke KH,; Klump B,; Gregor M,; Hinz A.)
Here's to your good health and happiness!
This is my mom and dad and my grandparents in 1959. Since celiac is genetic, at least one person in this picture also carried the gene and may have suffered with a whole host of related symptoms for years. Fortunately awareness is on the rise, testing is getting better, and I'm confident that diagnosis and the time it takes to get a diagnosis will improve drastically in the years to come.
The warm and inviting Toté Bakery & Store -- much better than that which preceded it.
I was first diagnosed with anemia when I was twenty. I was trying to donate blood and win tickets to a Heart concert in 1984 at the tender age of 20. I'd organized the blood drives in high school and had donated at least three times prior, so I didn't expect there to be any problem. The blood drive lady sent me away and I didn't have the nerve to ask for a chance to win the Heart tickets anyway. (No worries, I've seen them, like, four times all together.) On the way back to Stillwater from Oklahoma City, my back really started hurting. In true college student fashion, I decided to deal with it when I got home by splitting a pizza and drinking beer with my roommates. The pain increased, and long story short, I went to the hospital and it turns out I had a kidney stone. To make an even longer story shorter, I ended up being hospitalized for a week because they didn't want to remove the kidney stone which wouldn't pass without ruling out leukemia as the cause of my anemia. One good thing about the bone marrow biopsy was that it really took my mind off of the discomfort of the kidney stone, at least for the 42 seconds of excruciating pain it caused. Fortunately I didn't have cancer, they gave me an iron infusion, surgically removed the kidney stone and sent me home with instructions about all kinds of crazy things to not eat to avoid another stone. And oh yeah, take some iron.
The anemia never really went away. Every new doctor, every physical exam, the answer was, oh yeah, and take some iron. It was when I switched to a terrific young female doctor that something changed. She said, after I had taken my iron faithfully for months, "You know, something's not right here and we need to get it figured out." She sent me to a hematologist, who connected my anemia to a recent bout of GI distress. It was he who first suggested that I might have celiac disease. Blood tests and one endoscopy and biopsy later and the celiac suspicion was confirmed. I've been on the gluten free diet for more than 18 months and I feel better in many ways, but inexplicably my anemia persists.
In the 28 years I've gotten used to being blamed for my anemia. Of course I was anemic when I was 20 -- I was a college student eating junk and drinking too much alcohol. Of course I was anemic through the 1990's and 2000's because I'm a vegetarian and what can I expect if I choose to not eat meat? Of course I'm anemic -- I'm a woman of reproductive age and I carelessly throw away copious amounts of blood every month. When I got the celiac diagnosis, I was both relieved to have an answer and infuriated that no one had suggested looking for a real cause until my new fabulous doctor and hematologist came along.
The gf diet has been life-changing, but so far it hasn't fixed my anemia. I've been going monthly for IV iron infusions, a two-hour treatment in a chemo ward with a nice view of Washington Square Park. I decided that this cannot be the long-term solution and that I don't want to spend any more years with a big medical shrug for an anwer regarding the cause of my anemia. The hematologist and I are certain my diet is sufficiently iron rich. So at my last appointment with my GI doc at the Celiac Center at Thomas Jefferson University Hospital, we decided to do another endoscopy (to see if I still have villious atrophy despite a strict gf diet) and a colonoscopy to see if there is some issue with my colon (I'd had a bout of colitis in 1987 -- at least that's what was diagnosed). Those procedures happened this morning, and I'll be happy to not go through that again, especially the prep, for another 10 years. Things looked good. I will call for biopsy results in a couple of weeks. Hopefully everything will come back normal. Which will leave me to continue to sleuth out the cause of my anemia. Or just continue to deal with it until menopause and see if it resolves then.
There were a couple of highlights to the day. One is that it is an absolutely gorgeous day out, and while I can't operate heavy machinery, I did get to operate a rake and a pitchfork in the garden. Another was that, though the experience is generally unpleasant, I have a loving spouse who rearranged her schedule to look after me and drive me around. And the third, a biggy, was a post-procedure side trip to Toté Bakery & Store in the Italiam Market section of Philadelphia. Everyone should console themselves with gluten-free raisin challah warm from the oven after half a dozen medical professionals have colluded to drive a camera and other assorted equipment through the entire length of their alimentary canal after a day of no eating and an evening and night of -- ahem -- cleansing.
I went a little crazy at Toté. In addition to the challah, I got two other kinds of gf bread (quinoa and teff), an onion roll, a piece of gf carrot cake, a couple of nutrition snack bars, and a jar of their special hot sauce. I got Jenn a thank you cannoli. The nice lady who helped me assured me that the bread freezes well, which is good, since I don't really need to eat a bunch of refined carbs non-stop -- it would be contrary to my weight management strategy -- but having them on hand for the occasional treat will be nice. I spent nearly $40, which is twice as much as my co-pay. I ate at least a third of the warm challah in the car on the way home. Worth every penny.
The Wall Street Journal ran this article a few days ago. It reports on a recently published medical opinion paper that posits that the medical community should acknowledge three levels of gluten issues: 1) Allergy, 2) autoimmune disorders like celiac disease, and 3) gluten sensitivity in which neither an allergy or autoimmune disorder is detected, but in which individuals who go on a gf diet show an improvement in symptoms. Many doctors these days don't take the claim of gluten sensitivity from their patients very seriously. In my own case, the GI doc who did my upper endoscopy and biopsy was skeptical of my (and my hematologist's) suspicious that I had celiac, even in light of my positive antibody tests (frankly, he was a moron and I don't think he read my file, but that's another story. I have a much better GI doc now.) Needless to say, I think it's really important for more doctors to take diet and nutrition into account when addressing physical and mental challenges presented by their patients. I'd go so far as to say that they should look at diet and nutrition FIRST. I recently blogged about and attached a link to a TEDx Talks by Dr. Terry Wahls in which through diet (a paleo diet, which is devoid of grains) she makes a remarkable recovery from debilitating symptoms of MS. I recently read an article about a possible connection between gluten and ALS (aka Lou Gehrig's disease.) In my own life, I know people who have tested negative for allergies or celiac or who haven't been tested at all, but who have shown a complete abatement of symptoms when going gluten free.
Here's my friend Betty's story. She discovered that gluten was behind her persistent cough. (Betty's the president of Guardian Nurses -- truly you want GN in your corner if you are dealing with complicated or long-term health issues for yourself or a loved one.) Other people I know personally are benefiting from a GF diet without the benefit of a celiac or allergy diagnosis. A friend and co-worker who has persistent debilitating GI distress who tested negative for celiac feels fine when she adheres to a GF diet. The asthma of child of another co-worker and friend is much improved from following a GF diet. A dear relative of mine whose doctor was ill-equipped to pursue a definitive diagnosis cleared up many significant GI issues AND supported his fitness regimin by going gluten-free. One friend had Dermatitis Herpetiformis (a classic sign of celiac) but tested negative when biopsied, who has resolved her issues on the GF diet. How many people do you know that suffer from canker sores or rheumatoid arthritis or lupus or teeth enamel problems or fertility issues or a host of other problems who have no idea what the cause is and can't seem to get better?
I don't believe that all of our ills are caused by gluten. I do believe that as a society we regularly eat things that are either not healthy or which have been so genetically engineered over time as to make them unrecognizable as food to our systems, confusing our natural defense mechanisms and setting off a chain reaction within our bodies from which we get sick.
I strongly believe that each of us needs to take responsibility for our own health and well-being. I try to avoid preaching. I do believe that if a person gets a diagnosis that confirms that damage is being done to the body by eating gluten that they are more likely to adhere to a strict GF diet and improve not only their quality of life NOW but decreasing the likelihood of related more serious health issues later. But for those who haven't tested positive, don't buy it if your doctor says that gluten isn't the issue. Trust your intuition. Listen to your body. Keep looking for the answer. It's your life and you should feel as good as you possibly can to make the most of it.